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I have called Patientslikeme.com my home for what will be a year October 7, 2008. In that spaan of time my division Parkinson’s has grown from 287 to 2300 plus. Growth has brought on some problems with extremely close interaction but because we(the oldtimers to the site) believe in our policy of “one on one” therapy as needed, it remains a very cohesive group. We sit up with each other at night when in pain and email each other. If that doesn’t work we call each other and I travel with PLM tee shirt to different cities to have the member sign the shirt and thus at to their feeling of unity. I have been to the NYC Parkinson’s walk and the YOPN confeence for my friends on the site and will continue. The site control is excellent and we all feel free and safe enough to really state how theses diseases and their medications effect us daily. When one gets ingrosed in friendship on the site pain takes a back seat and we win. I am Pokie Too and am so glad you came to visit us in action.

I’ve been a member of the Parkinson’s group on PLM for quite awhile now, and am excited to think that the aggregate of data can be so useful in research. I feel like I am doing my part to help find the cure.

I have nothing but high praise for PLM and their business model and do all I can to keep all my data up to date and accurate.

Keep up the good work and spread the news about this site. There is power in numbers!!!!

Privacy advocacy is a problem. HIPPA by law required Universal Patient ID numbers to be standardized that is to say a PRIMARY key so that all sources of data between all health care organizations could be work together.

I actually have not see the site yet that she is referring to but I run a “Benchmarking” service for our clients and we typically do research across 20k patients and 500k encounters. We are able to better see treads with our sample then most traditional research methods.

I believe that world wide patients need to more actively understand their own conditions and treatment options.

Having other people as a support group is also a benefit in most cases. I would suggest that some clinical people should monitor patient suggestions or some nut job will convince others that eating mercury with every meal helps…. or smoking is the key to long life, etc. The quality of information can suffer when the unqualified are allowed an equal voice.

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